A Message from Jill’s Mom

In 1992, I never would have dreamed I’d be writing you this letter.

Back then, Lon and I were “typical” parents. We had three great sons, and our lives were a flurry of baseball practices, soccer games, and youth group. As senior pastor of McLean Bible Church, Lon was focused on preaching and serving the needs of our growing congregation. We loved the people and our ministry there.

Life was busy, and it was good.

Then, at 40, I had a big surprise. I was pregnant. Lon and I had always wanted a girl; we were thrilled when our doctor said we were expecting a daughter. I dreamed of ballet class and shopping trips, slumber parties and prom photos. As Jill was born, the first words I heard were Lon’s: “Brenda, you got your little girl!”

Jill was a dream come true. We welcomed her home to, you guessed it, a pink room full of pink toys and little pink outfits. After three boys, I was done with blue. When she was three months old, I was changing her diaper one day, and her arm started shaking. Her fist was clenched; her little arm trembled in an odd way for about 30 seconds.

It happened again a few days later. The doctor sent us to a neurologist, who prescribed anti-seizure medication, and we thought we were done. But the seizures kept coming. A few months later, I had Jill in her stroller at the beach. Suddenly her head twisted to one side, her arms and legs started flailing violently, and her eyes rolled back in her skull.

It was her first Grand Mal seizure, and the beginning of our nightmare. The doctors could do nothing. Jill had more and more seizures. They were like brutal lightning storms in her brain, leaving her exhausted and afraid. Lon and I desperately prayed for her healing, but we were in a deep, black maze with no way out. On Jill’s first Thanksgiving, she had 19 Grand Mal seizures.

Incredibly, our little girl was still hitting her milestones. She was learning to crawl, walk, and talk. She knew her colors. When she was in need, we’d hear her little voice calling for us. But the seizures were burning out her brain. We watched helplessly as she lost abilities she’d once had. Bit by bit, she lost her language. Then she only had two words left. They were the words that tore our hearts: “Mama! Dad-dee!”

“Oh, God!” I prayed. “Just let her keep those two words. Just those!” But by then, Jill was fighting for her life. I was fighting that fight with her, for her, pleading with God and the doctors for the life of our daughter. So it didn’t matter so much when all Jill’s words finally slipped away.

Meanwhile we could no longer come to our three boys’ sports events or just take them out for pizza and a movie. Our lives revolved around Jill’s fragile, declining health. We were physically, emotionally, and spiritually exhausted. I cried all the time. Our boys were hurting, but they didn’t want to bother us with their needs when Jill needed so much more.

One morning, when Jill was two and a half, I was sitting with her on the floor in her pink bedroom. I guess I assumed she’d be having another seizure soon–she was always just about to have another seizure–and I knew I could better help her if we were on the ground. I played gently with my little girl, singing to her even as I wept.

“Oh, Lord!” I sobbed, “Will I ever stop crying?” Tears fell down my face. The pain of my daughter’s pain was overwhelming. There was no hope, no way out, just an endless, dark future of exhaustion and grief. “God!” I wept. “I am at the absolute end of myself! I don’t know what to do. The only thing I ask is that You use Jill in a mighty way, because this hurts so much, and I don’t want to waste this pain!”

Looking back, it seems odd that I asked God to use Jill, not me. After all, she was just a small disabled girl; I was the adult, the successful pastor’s wife, the person whom God would logically use to do something.

But in my feeble prayer, I was finally giving up my control of Jill’s life to God’s will for Jill. I was laying down my dreams … and somehow, in that desperate prayer, my heart knew what my brain did not. As the Scriptures say, God uses the weak things of this world to shame the wise. He uses small, broken things to accomplish His great and perfect purposes.

And that’s what He was going to do through Jill.

A few hours after I prayed in tears on the nursery floor, I received a phone call from Mary, a woman I’d never met. She told me that God had told her to call. Through our conversation, which was mostly me crying and Mary listening, Mary made a plan to organize some caregivers for Jill so Lon and I could get some rest.

In short, Mary gave us respite. Over the weeks that followed her call, we finally got some sleep. With rest, we were able to make better decisions. We took better care of Jill. And we were able to spend time with our boys.

Respite gave us hope. It changed our lives. I don’t know where we’d be today if we hadn’t gotten it. Lon says he doubts he’d still be in the ministry; perhaps our marriage wouldn’t have survived. I doubt we could have weathered the storm of Jill’s disabilities without the grace of God, expressed through His people helping us.